The next 2-3 years were kind of a blur. We used enemas once a week to get Greysen to poop.We kind of, without realizing it, had a system to get him to go. Sometimes I would physically feel his pain and sickness. I just remember thinking, "He has not pooped in 7-10 days this MUST be poisoning his little body." It would make me frustrated and cry. Part me thinks it was my sense of urgency to literally get that crap out of him that kept him alive. I would do whatever it took. I would sit for hours on the bathroom floor while he tried as hard as he could. I would have to coach him through it every few minutes like a husband coaching a wife pushing a baby out. At one point he pooped and then immediately vomited everywhere. I kept telling Kyle, "I think he has a blockage." Sometimes he would even shake afterwards and be very cold. I can't even type this without crying. My heart just hurts for everything he went through but also because he could have died...should have died. I now know that enterocolitis is a huge risk factor in kids with Hirschsprungs disease and these symptoms are exactly what he had on more than one occasion. When you have waste built up for so long and then it is released suddenly, the bacteria enter into your blood and that is why you vomit and get very sick. It is truly hard to believe he didn't die. That may sound dramatic but it is the truth. It is more than gut wrenching to watch your son be so sick and not be able to help him.
Today is Good Friday and I can't help but sit here, as I type this, and wonder, "Is this a glimpse of how God felt as he watched his Son suffer on the cross?" He sent his one and only Son to die for us. For people that would choose to reject him and hate him. He knew and knows that not everyone will accept him yet he still sent his one and only son to die for us! I know that some people may say, "If God is so great then why did he let your son suffer?" I say, "God is so great he SAVED my son from suffering... He saved him from eternal suffering." There are things in life that seem unbearable, unfair, and unjust. Its part of life. We live in a sinful world but its through those trials and situations that, if we look to God, we can see him working, protecting, and shaping us. I would have never asked for my son to have Hirschsprungs but there are invaluable lessons I have learned through it and hope that he will too. As he grows older, I hope that he can be a beacon of light and hope in this world. If God can use POOP to teach us lessons then he can do anything! If we look for the good in things we will find him. If we listen for him we will hear him. He is there. He is everywhere. And just in case you didn't know it...he loves you. I hope that this blog encourages you and brings a little hope to any of my readers. I'd also love to be praying for my Hirschsprung's family readers. Leave me a comment with any prayer requests! And if you don't believe in God that is okay too but I would love to still pray for you and your son or daughter. Thanks for reading today! I hope you have an extra special Easter weekend!
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Very beautiful! Its crazy how alone you can feel then read someone's story and realize that they have had the same experience. Thank you for sharing! God bless!
ReplyDeleteI have just found your blog. I too am a mum of a child with hirschsprungs disease. My heart aches for your son that you didn't get a diagnosis for so long! Thank you for sharing your story. I too have seen God use my daughters condition to bring me new revelations of himself. As much as I hate hd, its bought us closer together as a family, closer to God and has given me a very real appreciation for how tough life can be, but that through that, God has been our constant rock.
ReplyDeleteI look forward to reading more of your blog entries.
With love from one mum to another,
Frances from New Zealand
GOD IS GOOD, We have been blessed with 6 beautiful grandchildren, 4 boys and 2 girls, our youngest 7 month Mason, has Hirschsprungs, he had surgery at 6 weeks old, and it seems like what could go wrong did, but he is the sweetest, and best baby, almost always has a smile, I am just amazed that he is not a fussy baby, prayers for your family
ReplyDeleteGod bless!I have 2 HD girls(2years and 6 months)...Thank you for sharing
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